A Question of DNA

The girls are on their Mid-Winter break and we took the opportunity to find some sunshine.  My parents have a condo in Palm Desert, California and they graciously allowed us to use it for the week.  They have owned the condo for about 5 years, but this is the first time that the timing has worked out for us to use it. 

It is, of course, beautiful.  It doesn't surprise me at all that the condo is done to perfection and looks like it came straight out of a showroom.  My mother has always had beautiful taste and an eye for decorating.  She also takes great pride in having her home meticulously neat and tidy.  I am in awe of the work that she has done and the comfortable way it feels.

My mother, my sister, my grandmother and my aunt all have these same characteristics.  They all have beautiful homes and have a knack for things.  I don't have it.  I would like to think I do, but the fact is I really don't.  I know what I like and what I don't like as far as decorating, but I don't have the first clue of how to put it all together.  "Things" start to feel like clutter to me in my own home and instead of adding to the feel of the decor, they begin to feel like something else that collects dust.  It's not that I don't care what my home looks like, I do care.  I just don't know how to make it look the way I want to.

I imagine it is a question of DNA or maybe environment.  Maybe my mother got it from my grandmother and my sister got it from my mother.  So what happened to me?  How does DNA work?  If my sister and I come from the same gene pool, why don't we get the same characteristics?

The same can be said for having cancer.  Neither my mother, my sister, my aunt or my grandmother have been diagnosed with cancer, thank God, but I have.  Is it something in my DNA?  Is it something in my environment?  What is it? 

I feel like I need to figure it out because as much as I would like to have the taste that the women in my family have and be able to pass it on to my daughters, I am more concerned that what I might be passing on to my daughters is much more sinister. 

I don't want my daughters to ever have cancer.  I sincerely hope that in the way that I missed the decorating gene, they will miss the cancer gene.  I hope they have beautifully decorated homes and an appreciation for things-all while they are cancer free.

World Cancer Day 2010

February 4th is World Cancer Day.  A day designated to raise awareness of the number #1 killer world-wide.  Not war, not HIV/Aids, not Heart Disease, not natural disasters....cancer.  That's not to say that there aren't other worthy causes in the world, because that just isn't true, but I think that sometimes people think that cancer is something far away and removed from them. 

Cancer isn't far away at all.  It can affect you, your parents, your siblings, your children, your friends.  Here are a few examples:

My friend Michael-At 45 he was diagnosed with squamous cell carcinoma (an oral cancer).  He is not and has never been a tobacco user.  He is healthy and active and he is now facing his 4th surgery to remove cancerous tissue after already completing chemo and radiation.  He has two tween age kids.  Michael is still fighting.

My friend Ankie-At 46 she was diagnosed with Stage IV breast cancer and thyroid cancer.  She is a life long athlete, eats organically and makes sure that she uses no chemicals/pesticides in her yard or home.  She has two beautiful girls.   After chemo, several surgeries and breast reconstruction, Ankie is hopeful that she is beating cancer.

My friend Wendy-At 45 she was diagnosed with Stage IV colo-rectal cancer.  Wendy is a nurse and takes care of people every day.  She has no family history and had no reason to suspect that colo-rectal cancer was in her future.  She also has two beautiful girls.  Wendy is still fighting.

My friend Marty-At age 41 he was diagnosed with a rare cancer called Thymus Carcinoma.  Marty was a firefighter and a fitness buff, training other firefighters to improve their health.  He had two young wonderful children.  Marty lost his fight June 3, 2008

Me-Tracy-At age 43 I was diagnosed with Stage II breast cancer.  I have no family history and no typical risk factors.  I have two perfect, wonderful girls.  After chemo, radiation and surgery, I am hopeful that I am beating cancer.

On World Cancer Day, make a commitment.

• Do it in your own life, go out and be active, limit your alcohol, be healthy in your diet choices, DON'T SMOKE, be aware of your environment and your risk factors.
• Be Informed.   http://www.who.int/mediacentre/events/annual/world_cancer_day/en/index.html
• Give time or money.

Click to give free mammograms:  http://www.thebreastcancersite.com/clickToGive/home.faces?siteId=2&ThirdPartyClicks=BCS_linktous_120_02

Check out the opportunities at the American Cancer Society:  http://www.cancer.org/docroot/home/index.asp

Donate today. I am walking in the Susan G. Komen 3 day walk again this year.  I am hoping to raise over 5000.00 dollars this year.  http://www.the3day.org/site/TR/2010/SeattleEvent2010?px=2282716&pg=personal&fr_id=1471

Doctors and Nurses and Techs, Oh My!

This week is tune-up and preventative maintenance week.  Yesterday I had a follow-up with my surgeon and a bone density scan.  Tomorrow I have a follow-up with my oncologist, a zometa infusion and an MRI. 

I currently think of myself as a healthy person so it is kind of strange to be spending so much time at doctors offices and hospitals but it also helps me to maintain the idea that I am a healthy person.

The bone density scan is something I will have once a year (this is my second one).  Because I was forced into menopause through chemo and because I am taking Tamoxifen, there is some concern about bone loss so I will have this test each year to make sure that my bones are holding up.

I have an appointment with my oncologist every 3 months.  For the most part, these are now just appointments to make sure I'm not having any adverse side effects of the drugs, she will also do a breast exam and check my lymph nodes.  I have blood work done each time that tests various things such as my iron, my vitamin D level, my estrogen level and my tumor markers.

I will have my 3rd infusion of Zometa.  Zometa is a bisphosphonate which is essentially a bone density drug.  For me, with my diagnosis, this drug is a preventative.  Zometa has been shown to reduce the risk of a recurrence to the bones by roughly 30 percent.  I will have it every 6 months for 3 years.  It takes about 45 minutes for an infusion and so far I have had minimal side effects.  I generally have a day of feeling just a bit off, maybe a bit flu-like and tired.  It isn't debilitating though, and worth it in the end.

The MRI is just one more tool in my toolkit to look for lumps or differences in my breast tissue.  I have a mammogram every 6 months and alternate those with the MRI so I am having some type of imaging test done about every quarter.  

It is hard sometimes to force myself to spend the day at doctor's offices.  It is especially hard to have the Zometa infusion as that is in the same place that I had chemo.  It reminds me of how difficult it is.  Cancer is hard.  There is just no denying that it is a terrible, difficult disease.  However, I am grateful for good health care and thankful that so many people are on my team, helping me to make sure that I remain healthy.  So, I will go in on Friday and I will be grateful that I am going there to remain healthy and not because I am sick.

Can you say Soy?

When I was diagnosed with breast cancer, I was told that I am Estrogen and Progesterone positive meaning that estrogen and progresterone running through my body added fuel to the fire, so to speak, by allowing cancer cells to attach onto it and grow.

It is for this reason that I currently take Tamoxifen and will continue to take it for the next 4 years if not more.  Tamoxifen blocks the estrogen from attaching to any rogue cancer cells.  It is also for this reason that I have significantly reduced the amount of soy that I have in my diet.  Soy acts like an estrogen and the research up until this point has been very very inconclusive on the effects that soy has on estrogen positive breast cancer survivors like myself.

Now, don't think that I was a soy-aholic before my diagnosis, I wasn't.  I don't like soy milk, I don't eat tofu unless it is in hot and sour soup, I don't buy soy bacon or tofutti or anything else that is suppposed to make you think you are eating meat.  But here's the problem, soy is in EVERYTHING.  Take a look at your labels, there is soy in salad dressings, bread, soups, sauces, cereal.  Everything has some form of soy in it which makes it very difficult when you are trying to avoid it.   

Since giving up sugar and sugar substitutes, I have become an avid label reader so while I can't in all honesty say I have given up soy, I can say that I avoid it as often as possible because it was my understanding that it might increase my chances of a recurrence.

Finally, there is a study that says this just might not be the case. This study says that maybe, just maybe, soy is helpful in preventing a recurrence even for people like me who are estrogen positive and taking Tamoxifen.  Could it be true that I can go to one of my favorite restaurants, PF Changs, and order the edamame and eat it without concern??   That I can give my children soy milk without worrying about their personal breast cancer risk??

Three cheers for soy!  I'm going out to find some edamame....

Information Unleashed

In general, I think I do a pretty good job of staying informed about the latest in breast cancer research as well as in my own personal cancer journey. There is information that I have about my own diagnosis such as my prognosis, the survivability rate, etc that I don't particularly like, but I have them.

When I was first diagnosed, I chose to take an Oncotype test that is pretty darn reliable at indicating recurrence rates in breast cancer patients. It is a simple test and in some cases it is used to determine if people are a good candidate for chemotherapy. In my case, my pathology report came back saying that my diagnosis was a Grade 3 out of 3 which is aggressive so my doctor agreed to the test, but indicated that she would be VERY surprised if it came back with a low score.

The test results take several weeks and come by mail. I got my big white envelope in the mail and found that I couldn't open it. Though I knew that my cancer was aggressive and that there was no chance I was going to avoid chemotherapy, I found that I couldn't deal with an actual number saying I had x% chance of recurrence. I know roughly what my chances are of a recurrence, but didn't want to carry a number around in my head.

I gave the envelope to my oncologist, told her I didn't want to know what was in it, but wanted to know if we were on the right path as far as chemo, radiation etc. She said we were definitely on the right path and that the oncotype score did not change our treatment plan at all.

Yesterday I went in for a regular check up with my oncologist and asked her about having my ovaries removed. There are several reasons for this, mostly to keep the estrogen level in my body down, but also to decrease my chances of developing ovarian cancer. We talked about the pros and cons of having it done and I asked her if I should be doing it earlier than later. She answered that there was no need for me to do it right now, although with such a high oncotype score I should plan to do it at some point. Wait. Stop. "High Oncotype score?" I literally felt my head pop out of the sand.

She did not tell me my actual number so I still don't have to carry a number around in my head, but I do now have to carry that "High Oncotype score" in my head and try to figure out what to do with it. I like to tell myself that I am doing everything I can to keep my recurrence rate down, but that isn't entirely true. I am still not getting enough exercise and I am still carrying around some extra weight. These are two of the easiest things a woman can do to reduce her risk and I am still at an increased risk. I also now have to wonder if my treatment was aggressive enough. I had 4 rounds of chemo-the minimum amount that anyone has. While I certainly didn't want to do more, I thought it was enough. Now I don't know if I have done everything I could.

Information is powerful. Sometimes too powerful.

Healthy Living

Today I read two different articles discussing how what we eat and drink can affect the incidence of breast and other types of cancers.

From MSNBC
"Better diets, more exercise and controlling weight could also prevent more than 40 percent of colon and breast cancer cases in some countries"

In my case, I can't blame my cancer diagnosis on genes so I can scratch that off the list. I can't blame it on family history, cigarettes or obesity. There is no definitive reason why I was diagnosed with cancer and someone else wasn't.

I do believe that our environment has something to do with the increase in cancer diagnoses. I don't know what it is exactly. The food that goes in, the food that doesn't go in, the air quality, the toxins in the environment or some combination of all of the above.

I wish I could say that I am a perfect healthy specimen, but I'm not. I have tried very hard to modify my diet and for the most part I do quite well. I rarely drink anymore and have increased my exercise. But the fact is, I still am carrying about 20 pounds of extra weight, I still eat dairy and red meat and I could certainly use more exercise and less stress.

Though I very much appreciate the news articles, it is also a little bit frustrating to hear that 40% of cancers could be prevented with healthier living. Tell that to the organic eating, maniacal exercisers, yoga breathing people who have been diagnosed with cancer. Tell that to Lance Armstrong or Scott Hamilton. It feels a little bit like blaming the victim; "If only you wouldn't have eaten that steak, you wouldn't have been diagnosed with cancer..."

I put just as much faith in good eating as anyone else does, but there are plenty of people who have much worse living habits than I have and they seem to make it through life without a cancer diagnosis---(they may die of heart failure, but that is a different discussion altogether!)

So I guess the next time my daughters ask me how I got cancer, I'll have to tell them, "It was the Cheetos"

http://www.msnbc.msn.com/id/29407297/

No Smoking

Yesterday as I was walking to get my lunch, I saw a group of teenagers smoking. Here in Seattle, smoking is probably less prevalent than other places and maybe having grown up here I am less tolerant about it. It makes me sad and angry to see it.

When I was diagnosed with breast cancer, I had to take a good look at what my risk factors were and found that I really didn't have many. I did not start menstruating early, I don't have any family history, I have never smoked, I have since found out that I do not carry the BRCA1 or BRCA2 gene, I am not obese and though I had my children a little later (32 and 33), it doesn't increase my risk significantly. So with very few risk factors (can't change the fact that I am female for instance), I still was one of the unfortunate ones to be diagnosed with cancer.

Having cancer is not fun in any way, shape or form. It is not fun to go through chemo or radiation, surgery or hair loss, not to mention the emotional turmoil and the possibility of death. It is miserable and I want to shout it at the people that I see smoking. "WHAT ARE YOU THINKING??!!!!"

We all have a certain amount of risk factors, some we can change and some we can't. But smoking is a KNOWN cause of cancer. Not suspected; known. You smoke, you get cancer.

A few things I found on smoking and risk:

"Among male cigarette smokers, the risk of lung cancer is more than 2,000 percent higher than among male nonsmokers; for women, the risks were approximately 1,200 percent greater. Lung cancer is the single largest cause of cancer mortality among both men and women and accounts for more than one in every four cancer deaths nationally in the U.S."

"In all, it is estimated that cigarette smoking causes approximately 23 percent of all cancer deaths in women, and is responsible for 42 percent of all male cancer deaths (Shopland et al., 1991)"

Specific to breast cancer risk, teens who smoke are more likely to develop breast cancer before menopause and are more likely to be diagnosed with aggressive, hormone receptor-negative type breast cancer.

Every time I see a teenager smoking and am with my children, I tell them again that they will NEVER smoke. I will not allow it. I will not tell my girls that they can try it, that it is ok to do in moderation or only once. I will not tell them to use their own judgment. I will tell them that under no circumstances will they smoke. I hope and pray that having watched me go through cancer they will never even be tempted.

Math Lesson

Back in December I was supposed to have an appointment with the hereditary cancer specialist at Swedish. Bring on some ice and snow and my appointment went by the wayside. I was able to reschedule the appointment for January 13th. Larry went with me and we spent an hour or so going through our entire individual family histories. It's hard to keep track of everyone's illnesses and ages!

After an extensive discussion, we decided that I would be tested for the BRCA1 and BRCA2 genes. It is actually a mutation of the gene that is being tested for. Despite what most people think about risk, having a mutation of the BRCA1 or BRCA2 gene accounts for less than 10% of breast cancers.

Yesterday I received a call from Dr. Resta-the walking encyclopedia of hereditary cancers. My results are in and I do NOT have the BRCA1 or BRCA2 gene mutation known to drastically increase the risk of breast and/or ovarian cancer.

I am happy to know that I am not passing on a genetic predisposition to breast cancer to my daughters. People who carry the mutation have up to an 80% risk of developing breast and/or ovarian cancer.

So what does this mean for me and my children? The average woman has roughly a 12% chance of developing cancer in her lifetime. As someone who has been diagnosed with breast cancer already, my risk is now roughly double that-about 26% of a recurrence or a new diagnosis. Chemo, radiation and tamoxifen have have reduced that number even further to about 16%.

Because their mother has been diagnosed, my children now have about a 20% risk of developing breast cancer. However, since they have not yet reached puberty, this is a very rough number.

My sister, having come from the same gene pool and growing up in the same environment also has an increased risk. Her risk is now about 20% as well. Now we all have our numbers to do what we will with. Numbers are only numbers and even people with an 80% chance of developing breast cancer have a 20% chance of NOT developing it.

I have an 84% chance of NOT developing cancer again and I accept that number. However, I still am looking forward to the day that I can say I have a 0% chance of being diagnosed again and that my children and any other women on the planet have a 0% chance of developing it as well. Zero is my new favorite number.

Traditions

Every family has their traditions and when you have children, you either pass them on or create your own. We have done both. When I was growing up, my dad painted a holiday scene on our windows each Christmas season. I remember watching him do it and waiting patiently for the finished product. Though he was a much more talented artist than I am, I have carried on this tradition in my own way. It is something he passed down to me and I am now passing it on to my girls. They are excited every year when they see the paint come out and know that our windows signify the beginning of the holiday season for us.

For the last several years we have hosted a holiday open house for my extended family the week before Christmas. We started this tradition out of necessity. It was becoming impossible for everyone to get together once they had their own families, step-families and in-laws. It has since become something that Larry and I look forward to and the girls look forward to. They start asking about the date of the Open House right after Halloween. Traditions are important to them and even things that we didn't know were traditions, they have decided are.

Tomorrow I go to see the Hereditary Genetics Counselor at Swedish. I will be tested for the BRCA1 and the BRCA2 gene-the only two genes known to predict a higher risk for breast cancer and I will ask that Larry be tested as well. I don't have other people with breast cancer in my family, but I do have other types of cancer that may or may not be related. Larry has breast cancer in his family as well as other types of cancer. Though I will be very surprised if I do carry the gene, I want to know one way or another where both of us stand. I'd like to make sure that I am passing on an appreciation for painted windows and not an increased risk.

More Skin

I had the chance to go to another seminar at the Gilda's Club in Seattle. It is part of a series on Cancer and the environment. This particular seminar had to do with household products and cosmetics. As if there aren't enough things to worry about that cause cancer, now there is what goes on my face. It all gets to be a little overwhelming sometimes.

It is a bit like being in a haunted house where things just keep jumping out at you from every corner. I certainly believe that our environment has something to do with cancer. It just makes sense that as a developed country we have many uses for chemicals. We are a nation of convenience and image so our cosmetics and lotions and potions are very important to us.

I was stunned to find out how many things are suspected or known carcinogens in things that I use every day; cleaners, shampoo, makeup, nail polish etc. I think there are two ways that one can deal with this information. One is to PANIC! Shut the doors and live in a bubble (but not a plastic one!)Tell the world to go away, live off the land and grow your own food. I can't choose this one. I enjoy being out in the world and I refuse to be afraid of everything that I touch or buy. I think the other way to deal with this information is to be informed and try to make good choices.

There are plenty of choices that are easy and probably don't carry the same risks. For instance, we clean our floors with vinegar instead of using a chemical cleaner. For me, this is a pretty easy substitution. There are also more options available for purchase. At the seminar they told us about a website that can help you compare some of your daily household products. It is http://www.cosmeticdatabase.com. You can enter in anything you like; lipstick, detergent, your favorite lotion and it will tell you what type of things might be in the ingredients that are potentially harmful. The other thing that it tells you is that some percentage of products are better choices. For instance, the lipstick that I use says that 62% of products are better choices. I could definitely use this information to panic when I find out what is in my lipstick, or I can look at some of the other options and see if there is something that I might be comfortable with changing to.

Maybe the lipstick is what caused my cancer, but I am more inclined to think that it is a combination of many, many things. I can't change everything in my life, but I can try to make the best choices that work for me and my family and hope that I pick the right combination.